Innovative Approach for Self-management and Social Welfare of Children with Cystic Fibrosis in Europe: Development, Validation and Implementation of an MHealth Tool (MyCyFAPP)

Overview

Journal BMJ Open

Specialty General Medicine

Date 2017 Mar 18

PMID 28302638

Citations 14

Authors

Joaquim Calvo-Lerma

Celia P Martinez-Jimenez

Juan-Pablo Lazaro-Ramos

Ana Andres

Paula Crespo-Escobar

Erlend Stav

Cornelia Schauber

Lucia Pannese

Jessie M Hulst

Lucrecia Suarez

Carla Colombo

Celeste Barreto

Kris De Boeck

Carmen Ribes-Koninckx

Affiliations

Soon will be listed here.

Abstract

Introduction: For the optimal management of children with cystic fibrosis, there are currently no efficient tools for the precise adjustment of pancreatic enzyme replacement therapy, either for advice on appropriate dietary intake or for achieving an optimal nutrition status. Therefore, we aim to develop a mobile application that ensures a successful nutritional therapy in children with cystic fibrosis.

Methods And Analysis: A multidisciplinary team of 12 partners coordinate their efforts in 9 work packages that cover the entire so-called 'from laboratory to market' approach by means of an original and innovative co-design process. A cohort of 200 patients with cystic fibrosis aged 1-17 years are enrolled. We will develop an innovative, clinically tested mobile health application for patients and health professionals involved in cystic fibrosis management. The mobile application integrates the research knowledge and innovative tools for maximising self-management with the aim of leading to a better nutritional status, quality of life and disease prognosis. Bringing together different and complementary areas of knowledge is fundamental for tackling complex challenges in disease treatment, such as optimal nutrition and pancreatic enzyme replacement therapy in cystic fibrosis. Patients are expected to benefit the most from the outcomes of this innovative project.

Ethics And Dissemination: The project is approved by the Ethics Committee of the coordinating organisation, Hospital Universitari La Fe (Ref: 2014/0484). Scientific findings will be disseminated via journals and conferences addressed to clinicians, food scientists, information and communications technology experts and patients. The specific dissemination working group within the project will address the wide audience communication through the website (http://www.mycyfapp.eu), the social networks and the newsletter.

Citing Articles

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mHealth in sub-Saharan Africa and Europe: A systematic review comparing the use and availability of mHealth approaches in sub-Saharan Africa and Europe.

Aboye G, Vande Walle M, Simegn G, Aerts J Digit Health. 2023; 9:20552076231180972.

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Change in Nutrient and Dietary Intake in European Children with Cystic Fibrosis after a 6-Month Intervention with a Self-Management mHealth Tool.

Calvo-Lerma J, Boon M, Hulst J, Colombo C, Asseiceira I, Garriga M Nutrients. 2021; 13(6).

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Qin Y, Aqeel M, Zhu F, Delp E, Eicher-Miller H Nutrients. 2021; 13(4).

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Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study.

Floch J, Vilarinho T, Zettl A, Ibanez-Sanchez G, Calvo-Lerma J, Stav E JMIR Mhealth Uhealth. 2020; 8(7):e15896.

PMID: 32673237 PMC: 7381063. DOI: 10.2196/15896.

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